The Roller-Coaster of Chronic Pain
It can be really challenging for parents to smoothly ride the roller coaster of their child’s chronic pain.
The treatments that give hope, only to be dashed. Your child’s mood swings. The ups and downs of the pain levels.
The unpredictability of family outings – sometimes they can miraculously happen and sometimes the plans get scrapped at the last minute when your child is not well enough to go. The chronic morning (or afternoon) struggle of whether your child will make it to school.
The times when you’re the Energizer Bunny, researching treatments and being proactive with school and doctors -- and the other times when you feel defeated, helpless, and worn down.
The friends that come and go from your life and your child’s life. The ups and downs of your relationship with your partner regarding your child -- sometimes bringing you closer and sometimes tearing you apart.
Your empathy towards your child -- followed by waves of resentment or fear. The times when you feel the chronic pain has brought you and your child closer together -- and other times when you feel it’s responsible for your conflict. The times when you are sympathetic towards your child in pain when she is acting out -- and other times when you wonder if she is just being a snarky teen.
Whatever your specific ups and downs, every parent with a child with chronic pain has experienced the roller coaster.
What can you do?
It feels very isolating to deal with this problem. While up to a quarter of youth deal with some sort of chronic pain, it may seem like no one other than your child is experiencing this problem and that no other parent can relate.
Your friends and family who do not have a child with chronic pain cannot fully understand what you are dealing with. It can be very healing to join a support group, such as the weekly parent small group CHYPchat or the monthly parent CHYP meetings to get support from other parents who know the chronic pain roller coaster that you’re experiencing.
Make time to take care of yourself -- even in very small ways -- so that your tolerance for riding the waves is higher. Not only is self-care and engaging in creative healing good for you, it also models for your child the types of activities that will be helpful for them.
When children see their parents doing things that are good for them, they feel less guilty about taking so much of their time. Also, your child may have to be a little more independent if you are not always available, or learn to be more flexible if someone else is helping out who does things differently than you do.
As the parent of a child with chronic pain, you are frequently in “fight or flight” mode. This means that you need ways to intentionally relax both the body and mind.
Take a walk. Ride a bike. Do yoga or stretches. Garden.
You may not have time for a long walk or an exercise class. But even if you barely have any time, whenever you transition to a different activity, take one minute to take a few deep breaths, stretch your arms up to the sky, and then relax your shoulders. It can be helpful just to remind your body to breathe and relax several times a day.
You can even just scan your body for tight muscles and consciously relax them as you take a few deep breaths. You can put an app on your phone that will ring gently every hour to remind you to do this.
Get enough sleep.
Lack of sleep can increase anxiety and decrease tolerance for stressors. While you may find yourself bingeing TV shows to unwind from the day, try to stop what you’re doing earlier in the evening to ensure more sleep.
Do something soothing, such as taking a hot bath or shower, doing a facial, sneaking in a quick nap, or breathing in a calming aroma in the room through candles or essential oils.
Listen to a meditation or guided imagery. There are so many good apps for this, including Insight Timer, Calm, and Headspace. Some of them have guided meditations that are as short as 5 minutes.
Journal in bed either at night before you turn the lights out or right when you wake up in the morning before getting out of bed.
Do a crossword puzzle, Wordle, or read. If you don’t have time to read, listen to an audio book as you do chores.
Do something fun or silly, such as dancing around to fun music as you do chores, or watching a comedy instead of a drama. Try listening to music or a podcast once in a while about something that interests you instead of watching/listening to the news. Try to engage family members in a game.
Do something you enjoy, even for a few minutes. Play an instrument, draw, garden.
Aside from joining a support group, try to maintain a connection with family and friends. These relationships often suffer drastically when parents are dealing with kids with pain.
It may be frustrating trying to get your family or friends to understand what you are going through. Instead, let them help you take a break from it all. Go for a quick coffee or even just a phone call. Talk about other things, such as what you are reading or watching.
Go to church or temple, school meetings for parents, work events, or any other place where you can have time with other adults that isn’t about your child’s illness.
Ask For Help.
If you don't have time to socialize or do anything for yourself, really ask yourself whether you need help. Sometimes parents feel that they have to be the one to do everything for their child. But you cannot ride that roller coaster if you are doing everything yourself.
Ask for help. Ask your spouse, if you have one, to pitch in more. Ask a neighbor to pick up your other children. Ask your church or temple if other members can help bring meals over. Ask a friend to come to you so you don’t have to leave the house.
Don’t be afraid to ask for help. Your child will benefit from it, too.